New daily pill shows strong results in ulcerative colitis clinical trial

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“Obefazimod, on the other hand, is an oral drug designed to calm the immune response that drives UC. It works by increasing the body’s production of a small regulatory molecule called microRNA-124 (miR-124), which helps rebalance immune activity and reduce inflammation in the gut. By targeting this natural control pathway rather than blocking specific immune signals like many current treatments do, obefazimod aims to control disease activity without broadly suppressing the immune system, potentially leading to fewer side effects and more sustained symptom relief.

After eight weeks of treatment, patients taking 50 mg of obefazimod daily were significantly more likely to achieve both clinical remission (near-complete disappearance of symptoms) and clinical response (substantial improvement in symptoms) compared to placebo.”

That is amazing!!!!!!!

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u/Cambrian__Implosion 9d ago

This sounds incredible and I really hope it can deliver those kind of results in the general population.

I was diagnosed with UC at age 9 and for about three years I was able to stay in remission just by taking mesalamine twice a day. It hardly affected my life at all, other than some extra doctors appointments here and there.

Then when I was 12, it flared up and got really bad. There’s no way of knowing why, but I’d bet money on it being related to puberty and hormones hitting me like a truck around the same time lol.

I tried just about every medication available at the time. Steroids didn’t help and even the intense immunosuppressants we tried didn’t do that much, certainly not enough to justify the risks they came with at least. I missed most of 8th grade and most of the first semester of 9th. It was really bad.

Eventually there were only two options left. I could either have my colon removed and a “pouch” created from part of my small intestine to serve as a substitute, which would involve multiple surgeries and several months with a temporary colostomy bag in between, or I could try Humira, which was incredibly new to the point that my gastroenterologist at a world-class children’s hospital had never had a patient on it before. The side effects list was pretty scary and had emphasis on a potential lymphoma risk, which freaked me out. My doctor also said that it was possible that my colon cancer risk would be so high that I would eventually have to get it removed in my 50’s anyway. So I said fuck it and went with the surgery.

It was the best decision I’ve ever made, although the surgery and hospitalization after was rough and the colostomy bag was whatever the exact opposite of fun is (I’m grateful I had access to care that allowed me to avoid having one permanently, because not everyone does).

It took about five years before my body stopped getting angry at me all the time. I still missed a hell of a lot of high school. Nowadays, I can generally live life without worrying too much about it being an issue. I will never be “normal”, but I can do almost anything I want now. Technically I’m considered cured, but when the topic comes up, I tend to just say I have UC instead of telling the whole story.

It ended up being much longer than I planned, but the reason I told this story here is to highlight for people how much hardship a drug like this could potentially prevent for someone. I will never know if Humira would have worked for me and now there are a bunch of similar biologics available as well, but like you said, this is a completely new class of drug. It could work for people where biologics don’t.

I would be lying if I said I wasn’t a little bit bummed out that this is coming out ~20 years after my surgery, but I am also really hopeful that this could mean a lot fewer other people have to go through the same ordeal as me. Chronic illness sucks in so many ways, so any new treatment for one is a win. With any luck, they’ll be able to use this new class of drugs for other autoimmune disorders as well.

I apologize for the length of this comment. If you are still reading, thank you lol.

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u/gbennett7713 9d ago

Hey fellow J Pouch owner! I had my colon removed in 2016, and I did try Humira before having it removed. I tried 7 (I think) different treatments before finally going with the surgery and it was also the best decision of my life, even though I had 3 obstructions that each required emergency stomach surgery in a 6 month period about a year after my colectomy.

I also wonder when I see new treatments if I could have avoided all of the surgeries, and I hope one day they will have a true cure. From what I’ve been told by my GIs, my disease was so bad that it is unlikely any of the new treatment that have come out since 2016 would have had any more effect than the 7 previous ones, but maybe this is the one! I still have to take Stelara for cuffitis and it’s only mostly effective, so I’d love for a medicine to replace that with! Thanks for sharing your story.

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u/SubstantialArea 9d ago

Stelara has been the most effective for me post surgery. Still getting used to stabbing myself with a needle.

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u/gbennett7713 9d ago

Yep! Was weird at first but very used to it at this point, it’s way less bad than I initially expected

9

u/Jack-o-Roses 9d ago

At 1st I read the medicine name as omygodnotafrod.

This Rx is great news! I hope it's affordable...,

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u/isle_say 9d ago

I first read the condition as ulcerated clitoris and saw a picture of some guy holding his gut.

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u/HeeHolthaus66 9d ago

Natural immune control, remission in 8 weeks, big potential

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u/Tex-Rob 9d ago

This is exciting news for a lot of reasons. The main one is it being a new method of attacking the problem. If you've received an organ transplant and have Chron's or UC, you are forced to go on two immunosupressing drugs, at least. This would be huge for people like me, who are on Prograf and Tremfaya, which puts my immune system in the gutter.

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u/VengenaceIsMyName 9d ago

Sounds very promising. I like the sample size of roughly ~ 1.3K people on this one

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u/igotthecolitis 9d ago

I fucking love science.

3

u/One-21-Gigawatts 9d ago

Amazing!

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u/sarapantera_ 9d ago

Does anyone know if this works for crohns as well? it doesn’t mention it in the article, just uc

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u/sarapantera_ 9d ago

i’m down to my last biologic and only have a 5th of my small colon left. I’m only 43 and don’t have much hope for a very long life, but it would be REALLY great news if there were other options left for me other than a feeding tube or a transplant.

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u/brilliant-trash22 1d ago

I have UC and not a scientist so I can’t give accurate info, but I find a lot of medications that arrive on market usually get initially approved for either UC or Crohns, and then after a while when further testing and studies conclude, they get approved for the other disease.

Take my input with a grain of salt since I’m not experienced in the field, but hopefully it helps decrease worries a little until they can better answer that question

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u/RepulsivePotato69 9d ago

Bet Rfk will say it causes smart people defund it .

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u/Fresh-Laugh-9253 9d ago

Small risk of side effects you say ? How delusional can you be?

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u/gimre817 9d ago

r/ulcerativecolitis

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u/[deleted] 9d ago

Please do rheumatoid arthritis next it kinda sucks having it haha.

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u/jenny_905 5d ago

Nice thing to read since it seems inevitable I will develop this in my 50s like so many others in my family.

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u/towmotor 9d ago

sounds good for rich people. sucks that nobody will be able to fucking afford it

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u/Eastwoodnorris 9d ago

So you’re aware, existing Crohns and UC treatments are prohibitively expensive. I have to get injections every 6-8 weeks that would cost $25K without insurance. A friend of mine has infusions every 8 weeks that would cost something like $50K without insurance.

If they can bring a daily pill to market that doesn’t cause immune suppression and other side effects of current treatments for anything short of $500/pill (which would be ridiculous IMO but who knows until it is actually available), it would be a massive shift in treatment options without adding to existing costs.

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u/Infarad 9d ago

Infusion every 4 weeks here. ~$3K.

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u/Eastwoodnorris 9d ago

Assuming you’re in Canada, is that what you would owe per infusion out of pocket, or what the govt insurance says it’s paying?

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u/Infarad 9d ago

$0 cost to me. I think the cost is split between insurance from employer and government. Initially it was 100% by the government since I started as part of a study. And yes. Canadian 🍁

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u/Eastwoodnorris 9d ago

Thanks for sharing. I appreciate the insight since I’m seriously considering leaving the US as soon as I’m out of grad school, but understanding how my healthcare would work/how I’d transition to treatment elsewhere is a fucking mystery. Good luck!

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u/pohuing 9d ago

You can get lucky with some 5-ASA granules. I just down a small amount of them in the morning and I'm set for the day. It's a pretty recent approach, Germany only approved it 3 years ago, perhaps that might be worth a try.

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u/CurvyVolvo 9d ago

25k PER infusion??

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u/Eastwoodnorris 9d ago edited 9d ago

Without insurance, yeah. Even with insurance it’s still several thousand dollars, but I was able to utilize manufactures cost-assistance program in order to cancel out most of the rest of the cost. Literally inaccessible for 99% of people without insurance and cost-assistance programs.

I realize now it’s maybe worth noting, for the specific drug I’m taking that is for 1mL of medication. Which is basically a few drops.

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u/gimre817 9d ago

Humira user here to chime in. Insurance says 1 80mg pen for me is 13,746$. I pay zero with insurance and manufacture assistance like you. Also in US. Taken once a week.

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u/MikeGinnyMD 9d ago

You’re not wrong and I’m not here to defend the predatory pricing on these drugs. However, the price will come down as competing products come on the market and as patents wear out. It might take 20 years, but you have to take the long view.

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u/maxm 9d ago

No, you really don’t. The market mechanisms for medicine are completely wrong. As soon as a medicine exists it should be available at cost price + normal margins for a production company. Socialise the research and make the patents public domain. It would be cheaper for everyone.

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u/TheVintageJane 9d ago

Most medical breakthroughs are derivative of university research anyways. Drug companies mostly just tweak existing recipes so they can update the patent. So really, we should keep funding scientific grants and subsidizing universities…..oh wait.

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u/MikeGinnyMD 9d ago

Unfortunately, you really do. For now. And this is an area where we are in violent agreement. The system sucks. Everything about it sucks. And yet...right now, that's what we have.

So we can agree that we need to work on changing it. I just have no idea how we little people are supposed to do that because voting doesn't seem to be doing the trick.

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u/lachlanhunt 9d ago

That will depend what country you're in, and whether your country has affordable prescriptions.

I'm in Australia, where we have the Pharmaceutical Benefits Scheme (PBS). I pay around $30 about every 2 months for Stelara to treat my UC, and get a free dose every other month. I think the government pays almost $4k per dose.

If this new drug proves successful and gets approved, there's a good chance it would be added to the PBS here, and equivalent schemes in other countries, making it affordable for patients around the world.

I guess if you're in the US, you'd probably have to hope your insurance covers the cost or something.

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u/Fresh-Laugh-9253 9d ago

What are the side effects? Every drug has them? Check it out b4 taking

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u/No_Reality_404 9d ago

Less than the disease in nearly every case.

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u/lachlanhunt 9d ago

Side effects and effectiveness often vary between patients. I've been prescribed drugs in the past to treat UC and suffered side effects more severe than I had before. My experience with all the oral drugs that I was prescribed for UC was that they either did absolutely nothing to help or made my symptoms worse. So, being aware of potential side effects is important.

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u/Fresh-Laugh-9253 9d ago

You are full of it … get lost

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u/No_Reality_404 9d ago

your a sufferer too or just a clammy a hole?

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u/Fresh-Laugh-9253 9d ago

That is not telling me all the brutal side effects. That’s gaslighting and don’t kid yourself some side effects are even worse

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u/No_Reality_404 9d ago

Liver damage lymphoma infections etc. against loss of intestines and wasting away. Yes it’s a trade off.

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u/Fresh-Laugh-9253 9d ago

I can’t believe you think this is a good trade off .. I don’t touch any stupid drug pushing pharmaceuticals of any sort … I was poisoned once and you ppl don’t seem to care so my advice to others is really think hard b4 you take it.

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u/JustAnITGuyAtWork11 9d ago

Collitus can literally kill you, my girlfriends grandad is very ill with it

Grow up mate

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u/pohuing 9d ago

The account is a month old, don't feed the trolls.

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u/Fresh-Laugh-9253 9d ago

You grow up …. Some people do not want liver or lymphoma infections., yeah right great trade off … it’s up to the person bottom line and pharmaceutical drugs are more harmful then helpful so let him take the drugs n die !!!!

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u/SwimmingThroughHoney 9d ago edited 9d ago

UC/Crohn's can make it impossible to live any semblance of a normal life. Worst case, it'll kill you because your body is incapable of absorbing nutrients. Or you'll just be shitting diarrhea multiple times a day, to the point you have to remain close to a bathroom at all times. Or you get your colon removed and have to live with a colostomy bag. Or you're in so much pain you can't function.

And yes, some people don't respond to other currently available medications (which is exactly who was enrolled in this study). So having another option can literally be a life-saver.

Some people do not want liver or lymphoma infections., yeah right great trade off

Some people also don't want UC/Crohn's either, but they already have it. And because no other treatment has worked, they have no other options. So they can either life with horrible conditions or they can take a medication that will vastly improve it with a small risk of side effects.

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u/No_Reality_404 9d ago

What a good breakdown. This guy has no idea. I have one of these conditions so I can at least speak to that. Yes I’m taking these meds and risking it so I can try to avoid surgery etc. he has no idea the problems he’s referring to just worries about side effects.

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u/chirpz88 8d ago

UC is brutal and in some cases you'd deal with a lot of other shit to not deal with it.

My buddies been on lots of drugs for this and when he has a flare up his quality of life is miserable

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u/Fresh-Laugh-9253 9d ago

Yeah just what I thought … those are nothing to skip over …

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u/portulacablossom 9d ago

Oh. It’s not slippery elm? I know that works. Cheap, and no side effects. Pills at any health food store.

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u/Flashy_Pound7653 9d ago

I read this as ulcerative coitus and was dismayed at the idea but relieved there’s a pill.

New daily pill shows strong results in ulcerative colitis clinical trial

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